We heard it at every turn: “She’ll be fine”, “What are you so worried about?”, “My friend’s kid didn’t talk till he was 4”, “She seems normal to me”, “You’re being paranoid”, “Don’t worry, just give her time”.
But I knew. I knew Lila was different. She was our first child and I still felt it was fairly evident from a very early age. Something wasn’t right…. she had terrible colic from the beginning, and would scream for hours and hours on end, she had GI issues, and sleep problems as well.
The closer she got to 12 months old, the more evident it became. Lack of eye contact, lack of response to our voices – I honestly thought she was deaf. She was never a fan of people other than Bill and me, and she was a mess if we strayed from our normal routine.
Along this journey we were accused of “creating the problem”, “self-diagnosing”, and a myriad of other incredibly hurtful accusations.
Through it all, Bill and I stuck to our guns, which was NOT easy to do. As a Mother, nothing made me feel worse (and more “Munchausen-y”) than people insinuating that we were “self-diagnosing”, like we WANTED something to be wrong with Lila. It absolutely killed me. It would have been SO much easier to bury our heads in the sand and pretend nothing was wrong. Trust me, there were times that we both desperately wanted to do that.
But Lila needed us, and we were determined to do every single thing in our power in order to find out if something was actually going on with her (and if it was) to confront it head-on as soon as possible. If we were wrong… GREAT! No one wanted that to be true more than Bill and I did, trust me. If we were onto something – Lila needed our help.
After her initial assessment, Lila started therapy with SoonerStart at 15 months of age. At that point, she would barely even acknowledge my husband and me. She was often in her own little world. It was scary at times, when I couldn’t get to her. I was terrified that we’d lost her. She was officially diagnosed with Autism Spectrum Disorder at 21 months old.
We still have a very long road ahead of us, but we have come such a long way in the past 11 months – and we are so beyond grateful. The little girl we have now is NOT the little girl we would have at this point had we not stayed true to ourselves, to Lila, and worked with her every single day for the past 11 months.
BECAUSE we didn’t listen to everyone else, Lila’s future was forever altered – in a positive way. Early intervention completely changed the trajectory of her brain and social development. I cannot say enough about Early Intervention and how important it is. My only regret is that we didn’t know more and start prior to 12 months of age.
If you KNOW in your gut that there is something different going on with your child – please listen to that voice. Don’t give up no matter what. It could very well mean all the difference for them and their future.
5 thoughts on “We didn’t listen… and that has made ALL the difference.”
This post spoke to me. I hear those words and I am taken back to 2009 when my then one year old was fighting a hard battle. The battle of Autism going unheard by most. Not to this Mama though, I knew. I was watching him battle and my heart ached. I knew what was going on, but I didn’t know where to go or who could help. Most didn’t believe me, they didn’t trust me. They thought I was overreacting, I was sheltering, I was being dramatic. They didn’t see.. and I think didn’t want to see. Difference isn’t acceptable, because it harbors fear in their heart. I couldn’t let them hold me back from helping my son. He needed me. He is now six years old and I couldn’t be more proud of how far he has come. A non-verbal, violent, child prone to frequent meltdowns is now a happy, goofy, verbal, incredibly intelligent young man. Our worlds finally found one another and I couldn’t be more thankful for that. My younger son was diagnosed at two years old and we put him in to the same school as his brother. My third child, our daughter, is our nuerotypical. She is followed by our youngest child who has Downs Syndrome. Our world is crazy, but I am the happiest and so incredibly proud of my beautiful babies!
I was one of those happy, affectionate autistic kids you sometimes hear about. I was diagnosed mildly autistic from one place and Asperger’s from another. I had no speech delay, which placed me in aspie world, I guess. Since I’m high functioning, no one suspected anything until I was about 4. They thought my coordination was off, my mom says.
This felt as if I had written it. Thank you for putting into words what I have felt for a very long time.
I love this story it’s my story too! I also didn’t take oh he will be fine I knew moms just know. Even before his first doctor I knew.
I saw this on Autism Speaks and was reminded about how glad I am that we didn’t listen either. We KNEW and while others tried to tell us nothing was wrong, we were putting all the pieces together. I blog too. I’m at Quirks and Chaos on Facebook. My guys is 13 and I just want you to know that things just keep getting better for us. The early intervention really paid off. I wrote this to encourage some of you younger parents. http://quirks-and-chaos.blogspot.com/2014/07/its-not-such-bad-life.html